Tuesday, July 14, 2009


I've been holding onto this post for awhile, but it seems like the right time to put it out there, along with this link, http://autism--tearsofaclown.blogspot.com/, to the blog of a friend and fellow writer. And in the spirit of that blog, finding the laughter after the tears, you should know that our six year-old son peed on our puppy yesterday afternoon, and it seems to have bonded them.

Autism Cure Not the Sweet News It Seems

I've had the May 10th cover section of the Oregonian folded on my desk since the day it arrived on my front porch, unable to process the mixed feelings I had about the page one article titled “Some kids appear to be cured of autism.” The subtitle, “Behavioral therapy can result in recovery in 10 percent of cases, study finds” should have filled my heart with joy, as the parent of a child on the autism spectrum, but instead it chilled me with the potential consequences of such a bold announcement.

In the body of the article, it makes clear that this is one study, and that the findings apply to kids with a mild form of autism, diagnosed by five, and after years of intensive behavioral therapy, thirty to forty hours a week, when therapy begins right after diagnosis, and that “recovery 'not realistic' for most children.”

But will the general public read the whole article like I did? Will they notice that nearly three-fourths of the “recovered” kids have other disorders like ADD, tics or phobias, co-morbid conditions common with autism? Will they learn, as I did recently, that kids with Asperger's don't fall into the category capable of “recovery” by these means, despite Asperger's syndrome being seen as a mild form of autism? Will “recovery” become not only the holy grail for parents, but the golden mean by which other kids and their parents are measured, that if we'd only done enough, soon enough, sacrificed enough, our kid wouldn't be belting the kid next to him at the playground because of a misinterpreted move or need to learn in a separate classroom requiring additional state funding, that again, in yet another way, it is our fault?

A friend with a son in the high-functioning category told me she'd seen the article and wanted to cry. She's tried everything. Every therapy. Every diet. Every this-will-fix-it fad that came along or was shoved down her throat by a well-meaning friend. She told me don't bother buying the five dollars a pop organic oranges—she'd tried it. She'd like to throw every best-selling copy of a celebrity's touted “cure” for their autistic kid straight into the author's face for fooling the public that if we follow their formula, every one of our kids can be “normal,” eating away at the tolerance we've built in the community of parents with typical kids, who already don't get it all too often.

Our own sense of responsibility is already eating us, now we can add this study to the list of things to flog ourselves with, the shoulda, coulda, wouldas that keep us awake at night, not because we don't love our kids like crazy, or embrace everything about them on good days and wish we could trade them for a puppy on bad ones, just like with any kid, but because of the moments of suffering we see on their faces when they don't understand why so many things are harder than they ought to be, or why they just clocked a beloved sister, or why no one at the park wants to play because of the (fill in the blank) behavior that identifies him or her as different.

I've heard that the visibility of autistic kids in the public eye, despite many more adults and adolescents on the spectrum, is because public support wanes as our kids mature. The money isn't donated for social therapy for teenagers or assisted living for adults without “innocent” kids made into poster children for this challenging condition. There is a notion that autistic kids “grow out of it eventually” and no longer need services or advocacy, despite statistics showing the need for assisted living or academic accommodations in college even among the highest-functioning.

My therapist, who is also a specialist in adolescent and child therapy and medicine management, believes that the science will develop to enhance those areas of the brain blocked or diminished by autism. Whether or not it is a cure, she believes it will become a treatable condition not for a tiny few with the unlimited means necessary for full-time behavioral therapy, but for most diagnosed on the spectrum. She thinks we'll see it within a decade.

When that comes, I hope it brings not intolerance, not a weeding out of an undesirable trait, but a better understanding of a complex way of thinking and a means of eliminating unnecessary suffering. I fear that “the cure” would take away the individuality, the quirky contradictions that come with autism that can lead to brilliance and leaps of logic. I fear that a cure would change our kid into someone else, making him into a neuro-typical, but unfamiliar person. I fear that unknown just as much as I fear the unknown that comes with autism, the ever-changing unrolling of symptoms, adaptations and deficits and strengths day by day.

So a cure isn't a simple thing to trumpet in triumph. Whether for a tiny minority, or a wide spectrum, a cure for autism comes with questions, concerns and caution. When that day comes, if it does, I won't greet that news with open arms, but let it in bit by bit, examine the research, look at the results, before considering with our son if that is the right thing for him.


Cathy said...

I am a mom with 4 children, with one on the spectrum. I am sorry to hear that your attempts at using nontraditional therapies have not been successful. However, I have to say not to be so quick to "poo-poo" them away. While my son is far from "recovered" (not cured), the non-traditional treatments have helped him tremendously. It was not night and day results, but slow and steady gains. Nearly a year and a 1/2 after starting nontraditional treatments (and in conjunction with traditional therapies) he has come a long way. It has given me hope that he will be able to lead a happy life, with his challenges and strengths, despite his autism, and that he will be able to have meaningfull relationships with his peers as well as his family. My best wishes to you and your son as you continue down this journey. Perhaps one day, our paths will cross. I live in Vancouver, Wa. Cathy

Woo222 said...

I couldn't agree more with you. Why don't people focus more on challenging the stigma and asking more of themselves rather than asking "What's wrong with him?" I am sickened by people who feel they are owed an explanation or an apology from the parent of the autistic child and the people who stare rudely and encourage their children to "play over here, we don't want to "bother" that little boy over THERE." PS, I've loved your blog for eons, but I'm terrible about commenting. ~Susan